Associations and costs of parental symptoms of psychiatric distress in a multi-diagnosis group of children with special needs
Abstract
Background Families supporting children with complex needs are significantly more distressed and economically disadvantaged than families of children without disability and delay. What is not known is the associations and costs of parental psychiatric distress within a multi-diagnosis group of special needs children.
Methods In this cross-sectional survey, families were identified from the Children's Treatment Network. Families were eligible if the child was aged 0–19 years, resided in Simcoe/York, and if there were multiple family needs (n = 429).
Results Some 42% of surveyed parents exhibited symptoms (mild to severe) of psychiatric distress. The presence of these symptoms was associated with reports of poorer social support, family dysfunction, greater adverse impact of the child's situation on the family, poorer child behaviour, unfavourable parenting styles and poorer child psychosocial functioning. The severity of the child's physical dysfunction was not related to parents/guardians most knowledgeable symptoms of psychiatric distress. Total parent costs were higher and children's uses of primary care services were higher in parents with symptoms of psychiatric distress.
Conclusion Parent symptoms of psychiatric distress are a significant societal concern in families with complex needs children. Children's rehabilitation efforts need to incorporate parental mental health assessment and treatment into existing programmes. This could lead to decreases in direct and indirect healthcare utilisation costs.
Introduction
It is well known that parents of children with complex needs are more psychiatrically distressed and socio-economically disadvantaged than parents of children without these disabilities (Emerson 2003; Hatton & Emerson 2009). Less is known about the child and family variables including socio-economic status that explain parent distress in a heterogeneous sample of children with complex needs.
It is now understood that there is a wide range of responses to parenting children with developmental disabilities including positive outcomes (Singer 2006). Earlier assumptions of virtually universal and unvarying negative impacts on families has been displaced by a more complex understanding of family adaptation and of long-term resilience (Singer 2006). The majority of families with special needs children do well despite the required increase in family resources such as time, energy and coping strategies (Brehaut et al. 2004, Mitchell & Hauser-Cram, 2008). There are, however, still a significant proportion of parents most responsible for the child with special needs that are not able to adjust. Meta-analysis results show that 29% of mothers have elevated symptoms of depression (Singer 2006), 12–15% have clinical depression (Bailey et al. 2007) and conclude this to be a significant problem. Community estimates of clinical depression are 6% in females (Kessler et al. 2002). Minor and major depression is linked to detrimental individual, familial and societal outcomes. Psychiatric distress is more prevalent in people with low socio-economic status. In a group of mothers receiving social assistance with identical amounts of income, 50% had depression and 50% reductions in depressive symptoms in 50% of depressed mothers were associated with 10% to 25% exits from social assistance within 1 year (Browne et al. 1997, 2000, 2001). If a group of people are at greater risk of psychiatric distress, they should be an important social concern, deserving of preventative and ameliorative efforts (Singer 2006).
Correlates of parental symptoms of psychiatric distress among parents of children with special needs have also been extensively reported in the literature. Numerous studies show a positive association between autism and/or child behaviour problems with mother's depressive symptoms (Beck et al. 2004; Bailey et al. 2007). Inversely, pro-social behaviour in disabled children has been positively related to maternal well-being (Beck et al. 2004; Stoneman 2007; Webster et al. 2008). Child quality of life has been negatively associated with parental stress (Majnemar et al. 2007). There are a number of studies showing a significant association between low social support and maternal depression. Social support has been shown to have an inverse relationship with maternal depression (Bailey et al. 2007), where mothers with depression report less family support. Maternal coping and family functioning are reduced when maternal depression is present (Herring et al. 2006; Bailey et al. 2007; McConkey et al. 2008). Also, increased parental stress is associated with unfavourable parental behaviour which in turn is associated with problematic child behaviour (Keller & Honig 2004). Finally, maternal stress is related to poorer maternal heath, namely decreased physical activity, social relations and perceived health (Allik et al. 2006; Bailey et al. 2007; Mugno et al. 2007).
The costs to society associated with symptoms of parental psychiatric distress in families with a special needs child are not as clear. It is known, as with other chronic disease states that only a few families with children and youth up to 18 years of age with disabilities consume a majority of the resources (Mitchell & Hauser-Cram 2008). In adolescents with developmental disabilities, maternal depressive symptoms were significantly associated with adolescent use of services. In this study, utilisation was measured simply as the number of visits to primary care physicians or to specialists in the previous 12 months (Mitchell & Hauser-Cram 2008). No research study could be found that measured direct and indirect healthcare costs for parent and child in a population of children up to the age of 19 years with complex and special needs.
The objectives of this paper were twofold: first, to investigate associations between socio-economic, family and child variables with parental symptoms of psychiatric distress in a multi-diagnosis, 0- to 19-year-old group of children with complex disabilities and needs, and second to explore trends in the direct and indirect costs associated with symptoms parental psychiatric distress in these families. More specifically, we sought to disprove the hypothesis of parents/guardians most knowledgeable (PMK) psychiatric distress being related to child physical function. If so, then physical function rehabilitation efforts aimed at the child would be insufficient to help distressed parents.
Methods
Research setting
This descriptive study was part of a cohort study examining the effects and expense of more and less integration of services that provide treatment and rehabilitation for children with complex needs. The cohort enrolled in the newly modelled Children's Treatment Network (CTN) of Simcoe/York counties in Ontario. The CTN approach is unique in that it is based on the collaboration of numerous existing autonomous, local service agencies utilising the service co-ordination and electronic record functions of the CTN. Ethics approval was obtained for the study by the Research Ethics Board of McMaster University.
Study design and procedures
This was a cross-sectional survey of families with a special needs child enrolled in the CTN from May to December 2007. Families were deemed eligible if the child was aged 0–19 years, resided in Simcoe/York, and if there were multiple needs within the family (child's special needs and/or families needs, e.g. a parent's medical or mental health problem). Twenty per cent of a random sample of PMK returned a signed consent form to McMaster University indicating their willingness to participate. The PMK then completed a telephone interview (1 h) by one of three trained interviewers from McMaster University. The size of this convenience sample of PMK completing the interview was 445.
Measures
Health of parents/guardians most knowledgeable
The Kessler scale (K10) (Kessler et al. 1994) measures PMK symptoms of psychiatric distress. Ten questions measure the frequency of feeling: sad, nervous, restless, hopeless, worthless, everything was an effort, tired for no good reason, so nervous that nothing could calm me down, fidgety, so restless could not sit still, during the past month. Chronic aspects of psychiatric distress in the past month are examined on a 5-point scale (1 –‘all of the time’ to 5 –‘none of the time’). Reliability of the K10 has Cronbach alpha = 0.93. The scale discriminates between community cases and non-cases of DSM-IV disorders (Kessler et al. 2002). It has been used with many cultures as in the WHO World Mental Health Surveys in 26 countries (Kessler & Üstun 2000). Scores range for 10–50 where ≤19 indicates no clinically important level of distress, 20–24 indicates mild distress, 25–29 moderate distress and 30–50 severe distress. Mild distress is included because of the chronic and disabling effects of minor depression called dysthymia (Steiner et al. 1999). These cut-off points correspond to Global Assessment of Functioning (GAF) (severity of impairment) scores. Areas under the receiver operating characteristic curve score of 0.87 were related to disorders having a GAF of 0 to 70 and 0.95 for disorders having a GAF score of 0–50 (Kessler et al. 2002).
Family functioning
Thirteen items taken from the National Longitudinal Study of Children and Youth (NLSCY) population survey (Statistics Canada Report October 2002), based on a subscale of the McMaster Family Assessment Device (Byles et al. 1988) were used to gather information on various aspects of family functioning (namely problem solving, communication, roles, affective responsiveness, affective involvement and behaviour control). PMK rated each item (e.g. ‘We avoid discussing our fears or concerns’) along a 4-point scale from 0 –‘strongly agree’ to 3 –‘strongly disagree’. Negatively oriented items are reverse scored so that higher scores represent greater family dysfunction. The measure has internal consistency (Cronbach's alpha = 0.86) (Byles et al. 1988). Scores range from 0 to 36 with scores ≥15 indicating and corresponding to clinical judgement of family dysfunction.
Social support
The level of social support of the PMK was assessed using an eight-item shortened version of the Social Provisions Scale (Cutrona & Russell 1987). Different social support constructs were measured: guidance, reliable alliance (i.e. feeling assured that others would be available to offer practical help) and attachment. PMK rate each item along a 4-point scale from 0 –‘strongly disagree’ to 3 –‘strongly agree’. Higher scores represent greater social support. The internal consistency across all dimensions of the scale ranged from Cronbach's alpha of 0.65 to 0.76. The internal consistency for the total score was 0.91. The total score ranges from 0 to 24 (Cutrona & Russell 1987).
Caregiver burden
The impact on family (IOF) scale determines the effects of a chronic illness on parents and families. Parents respond on a 4-point scale to the degree that statements apply to their family (1 –‘strongly agree’ to 4 –‘strongly disagree’) (Stein & Reissman 1980). Statements cover four dimensions: financial burden, family/social impact, personal strain and mastery (e.g. fatigue is a problem, see family and friends less, need to change plans at last minute, little desire to go out). The revised IOF scale (15 items) has Cronbach's alpha ranging from 0.80 to 0.91 and has been validated (Stein & Jessop 2003; Williams et al. 2006).
Child behaviour
Behaviour is measured using the NLSCY behaviour questionnaire for children aged 0–19 (Statistics Canada 2008). The questionnaire asks about how the child seems to feel or act regarding age-specific behaviours such as getting into fights, inability to sit still, worrying, etc. The parent is asked to rate the specific behaviour from 1 –‘never’ to 3 –‘often’. Behaviour subscales include hyperactivity/inattentive, pro-social, anxiety/emotional disorder, conduct disorder/physical aggression, indirect aggression and property offence. Items differ for age groups 0–1 years, 2–5 years and 6–19 years. Specifically, questions pertaining to aggression, property offense and pro-social behaviour do not apply to the younger age groups. Internal consistency is reported by subscale and age (Cronbach's alpha = 0.68–0.84) (NLSCY 2006).
Child quality of life
The Peds QL™ (Mapi Research Institute, Lyon, France) is a generic measure developed by Varni et al. (1999). The shortened version consists of 15 items comprising four core scales and addresses the physical (five items), emotional (four items), social (three items) and school functioning (three items) (Chan et al. 2005). Parent proxy report formats were used for children aged 2–18 because of the inclusion of children with limited cognitive or communicative abilities. Each item for ages 8–18 asks how much of a problem it has been during the past month on a 5-point scale (0 –‘never a problem’ to 4 –‘almost always a problem’). For children aged 5–7, the scale is modified to 0 –‘not a problem’, 2 –‘sometimes a problem’ and 4 –‘a lot of a problem’. Items are reverse-scored and linearly transformed to a 0–100 scale so that higher scores indicate better quality of life. Psychosocial quality of life (10 items) is computed as the sum of the emotional, social and school scale scores (range 0–100). Cronbach's alpha for this shorten 15-item measure for physical health is x = 0.60 and psychosocial health is 0.82. The Peds QL distinguish chronically ill and healthy children (effect size 1.59 for physical health and 0.61 for psychosocial health) (Chan et al. 2005).
Costs for health and social services
Health and social service utilisation is measured by an inventory developed initially by Browne et al. (1990) and is currently updated to be the Expenditures for Health and Social Service Utilization Questionnaire (Browne et al. 2006). This measure has consistently distinguished expenditures for use of services by youth with and without behaviour problems, people with and without mental illness, with and without a range of chronic diseases, with and without poverty (Browne et al. 1999, 2001). This tool was developed as a modification of Spitzer's work (Spitzer et al. 1976). It consists of questions about the respondent's use of eight categories of direct health services: primary care, emergency room, specialists, hospital episodes, hospital days (irrespective of episode), emergency room specialists, seven types of other community health and social professionals, and laboratory services. Recall data are used in order to assess the patient's use of all health services. Inquiries are ‘restricted to the reliable duration of recall span: 6 months for remembering a hospitalisation, 2 weeks for a visit to a physician, and 2 days for the consumption of a prescription medication’. To calculate 6-month utilisation, the various spans of time are extended to yield a 6-month rate of utilisation per category of health service, as proposed by Spitzer et al. (1976) (Petrou et al. 2002). The 6-month rate per category of service is multiplied by the 2006 unit cost (Canadian $) for that service. This approach to the measurement of costs was recently acknowledged by Guerriere et al. (2006, 2008) as one of the few measures of ambulatory utilisation published and empirically validated. Expenditures for the use of human services are consistently higher for people with depression and are reduced when depression is reduced or eliminated (Byrne et al. 2006).
Demographics of the family
A standard form including spiritual or faith orientation, ethnicity and languages was selected from the Canadian NLSCY that also includes community dwelling disabled children (Statistics Canada 2008). Socio-demographic data were gathered on the PMK gender, age and educational level as well as on household income and family status.
Demographics of the child
Demographics of the child includes child age, grade and PMK report of the main medical and other important diagnosis.
Analysis
Descriptive statistics (numbers, percentages, means and standard deviations) were calculated for demographic data, child/family variables and expenditures. In this report, the child and most knowledgeable parent (PMK) variable had a changing number of participants for several reasons. The behaviour subscale measures have different numbers of items applicable to different age groups: children under 2 years, children 2 to 5 years and children and youth 6 to 19 years. The pro-social behaviour scale items for children and youth 6 to 19 years were different for children 2 to 5 years. The parenting subscale measures have different numbers of items applicable to different age groups. The Peds QL is applicable only to children aged 2–19.
The behaviour scales for different age groups were transformed using the interpolation technique where the mean of the behaviour scale scores for children 2 to 5 years with fewer items were multiplied times the number of items for older children. This transformed mean was used in the analysis. In 18 instances, there were reports on two or three children with complex needs in the same family and only one report of parent variables. In these instances, the PMK was counted two or three times as appropriate to ensure a matched number of children and parents in the analysis.
Differences between dichotomised PMK symptoms of psychiatric distress (K10 ≥ 20 and K10 < 20) and family/child variables were compared using chi-square and t-tests. Expenditure data were skewed so the non-parametric Kruskal–Wallis test was used.
In addition, we aimed to find the most relevant variables associated with parental symptoms of psychiatric distress from the variables of interest including socio-economic status, family status, parenting style, child's behaviour and emotional problems as well as child's physical and psychosocial function. The following steps describe the approach to the logistic regression of analysis utilised.
- 1
The binary outcome as having clinically important symptoms of parental psychiatry distress or not (Yes: K10 ≥ 20; No: K10 < 20);
- 2
Logistic regression was performed including one variable of interest at a time to find relevant variables;
- 3
Logistic regression was performed including all relevant variables identified from (2) to investigate how they were associated with symptoms parental psychiatric distress;
- 4
Possible interactions were tested among the significant variables identified from (3); and
- 5
The goodness of fit of the models was assessed.
The parent was considered to have symptoms of psychiatric distress if their reported K10 score was greater than 20 and not psychiatrically distressed if the score was ≤20. Univariate logistic regression analyses were performed to determine if variables of interest were individually associated with parental depression/anxiety. Results were reported in odds ratio of having parental symptoms of psychiatric distress, including 95% confident interval and P-values. The odds ratio for categorical variables reflected the odds of having parental symptoms of psychiatric distress in one category of the variable compared with that in the reference category. The odds ratio for ordinal/continuous variables was expressed in the change of odds of having parental symptoms of psychiatric distress because of every unit increase in the score of the variable. In our univariate search for relevant factors, individual variables were considered to be statistically significant α = 0.05. Because of multiple testing, P-values <0.01 were considered statistically significant in the final multivariate analysis.
A multivariate logistic regression model was used to fit the same outcome on all relevant variables determined from univariate analyses. Finally, the interactive effects between significant variables from the multivariate analysis were tested. Results were reported in the same way. The Hosmer and Lemeshow chi-squared test was used to check the goodness of it of the models. All statistical analyses were performed in spss 17.0.
Results
Table 1 shows the demographic characteristics of participating families. The majority of PMK were mothers of the children (85%), born in Canada (61%) and spoke English (91%). The average PMK was 40 years, 90% were female, 85% were married/common-law, 68% were employed and the median household income was $60–$69 000. There was an even split between families residing in Simcoe County (52%) and York Region (49%). The average child age at interview was 7.94 years with 67% of the sample being male. Forty per cent of the children were in pre-school (up to and including kindergarten), 35% in grades 1–5 (elementary) and 25% in grade 6 (junior) and up (secondary school). Sixty-one per cent of children were receiving service from Community Care Access Centres and School Boards at time of entry into the CTN. The most frequent PMK reported comorbid diagnoses for the children were some combination of mental and behavioural disorders (78%), diseases of the nervous system (34%), autism (23%) and congenital malformations, deformations and chromosomal abnormalities (20%) (Table 1). Fifty-one per cent of children had more than one reported medical problem.
| ICD-10 diagnostic category | Count | % |
|---|---|---|
| A00-B99 Infectious and parasitic diseases | 3 | 0.01 |
| C00-D48 Neoplasm | 4 | 0.01 |
| D50-D89 Diseases of the blood and blood forming organs involving immune mechanism | 7 | 0.02 |
| E00-E90 Endocrine, nutritional and metabolic diseases | 17 | 0.04 |
| F00-F99 Mental and behavioural disorders | 349 | 78.43 |
| Autism | 104 | 23.37 |
| Unspecified disorder of psychological development | 82 | 18.43 |
| Specific developmental disorders of Speech and Language | 68 | 15.28 |
| Hyperkinetic disorders (ADD/ADHD) | 45 | 10.11 |
| G00-G99 Disease of nervous system | 150 | 33.7 |
| Cerebral palsy | 73 | 16.4 |
| Epilepsy | 38 | 8.54 |
| H00-H59 Disease of eye and adnexa | 20 | 0.04 |
| H60-H95 Disease of the ear and mastoid process | 11 | 0.02 |
| I00-I99 Disease of circulatory system | 11 | 0.02 |
| J00-J99 Diseases of respiratory system | 27 | 0.06 |
| K00-K93 Disease of digestive systems | 4 | 0.01 |
| L00-L99 Diseases of the skin and subcutaneous tissues | 3 | 0.01 |
| M00-M99 Diseases of the musculoskeletal system and connective tissues | 10 | 0.02 |
| N00-N99 Diseases of genitourinary system | 4 | 0.01 |
| P00-P99 Certain conditions originating in the perinatal period | 10 | 0.02 |
| Q00-Q99 Congenital malformations, deformations and chromosomal abnormalities | 88 | 19.78 |
| Down's syndrome | 30 | 6.74 |
- ADD, adults with developmental disabilities; ADHD, attention deficit hyperactivity disorder; PMK, parents/guardians most knowledgeable.
Parents/guardians most knowledgeable mean Kessler symptoms of psychiatric distress (K10) scores were stable across age groups of the children/youth (F = 0.006, P = 0.994). The average K10 score for the total sample was 19.91. Mild disorder was found in 20.9% of the sample (K10 score 20–24), moderate disorder in 10.6% (score 25–29) and severe mental disorder in 10.1% (score 30–50). Thus, 41.6% (n = 185) of this convenience sample were exhibiting symptoms (mild to severe) of psychiatric distress. Eighty-two (82.2%) per cent of PMK whose K10 scores indicate significant symptoms of psychiatric distress were not taking psychotropic medications. Another 17.8% of PMK with these symptoms were medicated but still having significant symptoms of distress. Some 4.6% of PMK without psychiatric distress were taking psychotropic medications.
Table 2 displays the parent and child socio-demographics characteristics by the presence or an absence of mild to severe symptoms parental psychiatric distress. A higher proportion of parents with psychiatric distress were not employed, not born in Canada, did not speak English at home and had incomes ≤$50 000/annum. Symptoms of parent psychiatric disorder anxiety was not related to their level of education, the child's school age, gender or main service provider organisation.
| Total | K10 ≥ 20 | K10 < 20 | Test statistics | |||||
|---|---|---|---|---|---|---|---|---|
| n | % | n | % | n | % | χ2 | P-value | |
| Respondent (PMK) | ||||||||
| Gender | ||||||||
| Male | 44 | 9.9 | 19 | 10.3 | 25 | 9.6 | 0.052 | 0.820 |
| Female | 401 | 90.1 | 166 | 89.7 | 235 | 90.4 | ||
| Relationship to child | ||||||||
| Mother | 380 | 85.4 | 162 | 87.6 | 218 | 83.8 | 1.200 | 0.273 |
| Other | 65 | 14.6 | 23 | 12.4 | 42 | 16.2 | ||
| Marital status | ||||||||
| Married | 377 | 84.7 | 150 | 81.1 | 227 | 87.3 | 3.237 | 0.072 |
| Other | 68 | 15.3 | 35 | 18.9 | 33 | 12.7 | ||
| Employment status | ||||||||
| Employed | 303 | 68.1 | 113 | 61.1 | 190 | 73.1 | 7.159 | 0.007 |
| Other | 142 | 31.9 | 72 | 38.9 | 70 | 26.9 | ||
| Country of birth | ||||||||
| Canada | 338 | 76.0 | 131 | 70.8 | 207 | 79.6 | 4.588 | 0.032 |
| Other | 107 | 24.0 | 54 | 29.2 | 53 | 20.4 | ||
| Household language | ||||||||
| English | 403 | 90.6 | 158 | 85.4 | 245 | 94.2 | 9.850 | 0.002 |
| Other | 42 | 9.4 | 27 | 14.6 | 15 | 5.8 | ||
| Household annual income | ||||||||
| Less than $50k | 148 | 33.3 | 79 | 42.7 | 69 | 26.5 | 12.911 | 0.005 |
| $50k–$100k | 167 | 37.5 | 60 | 32.4 | 107 | 41.2 | ||
| Above $100k | 128 | 28.8 | 45 | 24.3 | 83 | 31.9 | ||
| Don't know | 2 | 0.4 | 1 | 0.5 | 1 | 0.4 | ||
| PMK's level of education | ||||||||
| Secondary | 157 | 35.3 | 71 | 38.4 | 86 | 33.1 | 2.204 | 0.332 |
| Post-secondary | 283 | 63.6 | 111 | 60.0 | 172 | 66.2 | ||
| Other | 5 | 1.1 | 3 | 1.6 | 2 | 0.8 | ||
| PMK location of home | ||||||||
| Simcoe | 230 | 51.7 | 90 | 48.6 | 140 | 53.8 | 1.169 | 0.280 |
| York | 215 | 48.3 | 95 | 51.4 | 120 | 46.2 | ||
| Child | ||||||||
| Educational status | ||||||||
| Pre-school | 180 | 40.4 | 73 | 39.5 | 107 | 41.2 | 0.362 | 0.834 |
| Elementary | 154 | 34.6 | 67 | 36.2 | 87 | 33.5 | ||
| Junior | 111 | 24.9 | 45 | 24.3 | 66 | 25.4 | ||
| Child's gender | ||||||||
| Male | 297 | 66.7 | 124 | 67.0 | 173 | 66.5 | .012 | 0.914 |
| Female | 148 | 33.3 | 61 | 33.0 | 87 | 33.5 | ||
| Service provider | ||||||||
| Early intervention | 143 | 32.1 | 60 | 32.4 | 83 | 31.9 | .709 | 0.702 |
| CCAC and school | 271 | 60.9 | 110 | 59.5 | 161 | 61.9 | ||
| New CTN referral | 31 | 7.0 | 15 | 8.1 | 16 | 6.2 | ||
- CCAC, Community Care (Home) Access Centre; CTN, Children's Treatment Network; K10, Kessler scale; PMK, parents/guardians most knowledgeable.
Table 3 presents family/child variables by the presence or absence of mild to severe symptoms of parental psychiatric distress (K10 score or equal to or above 20 or below 20, respectively). The child's physical dysfunction (quality of life) was unrelated to symptoms of parental psychiatric distress. Child psychosocial functioning was poorer in PMK with symptoms of psychiatric distress (P < 0.001). Child behaviour scores were all higher (poorer) in children/youth of PMK with symptoms of psychiatric distress with the exception of pro-social behaviour which was lower (worse). These differences were all statistically significant. There was a negative association between all family variables the presence of PMK symptoms of psychiatric distress. In those with symptoms of psychiatric distress, social support was statistically significantly poorer (P < 0.001), family functioning was worse (P < 0.001) and the adverse impact on the family was greater (P < 0.001). There were greater hostile/ineffective and punitive parenting styles and less positive and consistent parenting in PMK showing symptoms of depression and anxiety.
| Variable (range) | Total | K10 ≥ 20 | K10 < 20 | t | P | |||
|---|---|---|---|---|---|---|---|---|
| Mean (SD) | n | Mean (SD) | n | Mean (SD) | n | |||
| Social support; higher scores indicate greater support | ||||||||
| Social support (0–24) | 17.58 (4.55) | 445 | 15.35 (4.44) | 185 | 19.16 (3.92) | 260 | −9.569 | <0.001 |
| Family functioning scale; higher scores indicate greater family dysfunction | ||||||||
| Family functioning (0–36) | 9.22 (6.1) | 445 | 12.37 (5.95) | 185 | 6.98 (5.14) | 260 | 10.204 | <0.001 |
| Impact on family scale; higher scores reflect less negative impact | ||||||||
| Impact on family (0–45) | 24.04 (9.9) | 445 | 19.25 (8.8) | 185 | 27.46 (9.2) | 260 | −9.443 | <0.001 |
| Parenting style; higher scores indicate greater presence of style | ||||||||
| Positive (0–20) | 15.18 (3.04) | 444 | 14.77 (3.26) | 185 | 15.47 (2.84) | 259 | −2.411 | 0.016 |
| Hostile (0–28) | 10.2 (4.93) | 440 | 11.91 (5.19) | 182 | 8.99 (4.35) | 258 | 6.209 | <0.001 |
| Consistent (0–20) | 13.46 (3.86) | 418 | 12.01 (4.02) | 178 | 14.54 (3.36) | 240 | −6.808 | <0.001 |
| Punitive (0–20) | 9.52 (2.05) | 425 | 9.09 (2.13) | 182 | 9.84 (1.92) | 243 | −3.789 | <0.001 |
| Child behaviour; higher scores indicate greater presence of the behaviour | ||||||||
| Hyperactivity (0–16) | 7.5 (3.83) | 425 | 8.61 (3.83) | 182 | 6.67 (3.62) | 243 | 5.333 | <0.001 |
| Pro-social (0–20) | 10.33 (5.72) | 276 | 9.19 (5.62) | 113 | 11.17 (5.66) | 154 | −2.822 | 0.005 |
| Anxiety (0–14) | 3.82 (2.97) | 428 | 4.64 (3.19) | 183 | 3.21 (2.64) | 245 | 4.945 | <0.001 |
| Conduct disorder (0–12) | 2.29 (2.77) | 425 | 2.72 (2.88) | 181 | 1.98 (2.64) | 244 | 2.781 | 0.006 |
| Indirect aggression (0–10) | 0.96 (1.64) | 164 | 1.27 (1.87) | 113 | 0.73 (1.40) | 151 | 2.590 | 0.010 |
| Property offence (0–12) | 1.57 (2.01) | 267 | 2.12 (2.34) | 113 | 1.16 (1.61) | 154 | 3.787 | <0.001 |
| Paediatric quality of life; higher scores indicate better quality of life | ||||||||
| Physical (0–100) | 55.77 (33.87) | 429 | 53.02 (33.87) | 183 | 57.8 (33.8) | 246 | −1.45 | 0.148 |
| Psychosocial (0–100) | 59.09 (18.62) | 429 | 53.61 (18.52) | 183 | 63.18 (17.7) | 246 | −5.44 | <0.001 |
- K10, Kessler scale.
The univariate and multivariable logistic regression analyses are reported in Table 4. In the univaraite analyses, the respondent's employment status, family income, country of birth and respondent's first language were found to be significantly associated with parental symptoms of psychiatric distress. Being employed, born in Canada and speaking English as the first language were associated with 42.2% (i.e. 1 minus odds ratio 0.578) and 37.9% (i.e. 1 − 0.621) and 64.2% (i.e. 1 − 0.358), respectively, lower odds of having symptoms of parental psychiatric distress in comparison being employed, born outside Canada and speaking other than English as the first language. More social support, better family functioning and less parental reported adverse IOF because of child's illness were associated with lower odds of having parental symptoms of psychiatric distress. The lower odds of having parental symptoms of psychiatric distress was also associated with more positive, less hostile/ineffective, more consistent and yet more punitive parenting styles. The odds of having symptoms of parental psychiatric distress were less when children exhibited less emotional or behaviour problems. Every unit improvement in child's psychosocial function score was associated with 2.9% (i.e. 1 − 0.971) reduction in the odds of having symptoms of parental psychiatric distress.
| Variable | Category | Univariate models | Multivariable model * | ||||||
|---|---|---|---|---|---|---|---|---|---|
| OR | 95% CI | P-value | OR | 95% CI | P-value | ||||
| Age of respondent | 0.984 | 0.959 | 1.009 | 0.200 | |||||
| Gender of respondent | Female | – | – | – | – | ||||
| Male | 1.076 | 0.574 | 2.018 | 0.280 | |||||
| Relationship to child | Mother | – | – | – | – | ||||
| Other | 1.357 | 0.785 | 2.346 | 0.275 | |||||
| Marital status | Married | – | – | – | – | ||||
| Other | 0.623 | 0.371 | 1.046 | 0.074 | |||||
| Employment status | Employed | – | – | – | – | – | – | – | – |
| Unemployed | 0.578 | 0.386 | 0.865 | 0.008 | 3.424 | 1.561 | 7.509 | 0.002 | |
| Family income | Above 100k | – | – | – | – | – | – | – | – |
| Less than 50k | 2.112 | 1.299 | 3.432 | 0.003 | 1.104 | 0.470 | 2.593 | 0.821 | |
| 50k to 100k | 1.034 | 0.639 | 1.673 | 0.891 | 0.388 | 0.163 | 0.926 | 0.033 | |
| Country of birth | Other | – | – | – | – | – | – | – | – |
| Canada | 0.621 | 0.401 | 0.962 | 0.033 | 0.771 | 0.330 | 1.799 | 0.547 | |
| Respondent's first language | Other | – | – | – | – | ||||
| English | 0.358 | 0.185 | 0.695 | 0.002 | |||||
| Residential region | York | – | – | – | – | ||||
| Simcoe | 0.812 | 0.557 | 1.185 | 0.280 | |||||
| Child's age | 1.015 | 0.973 | 1.058 | 0.499 | |||||
| Child's educational status | Junior | – | – | – | – | ||||
| Pre-school | 1.001 | 0.618 | 1.62 | 0.998 | |||||
| Elementary | 1.13 | 0.688 | 1.853 | 0.630 | |||||
| Child's gender | Female | – | – | – | – | ||||
| Male | 1.022 | 0.685 | 1.526 | 0.194 | |||||
| Service provider | New CTN referral | – | – | – | – | ||||
| Early intervention | 0.771 | 0.354 | 1.68 | 0.513 | |||||
| CCAC and school | 0.729 | 0.346 | 1.535 | 0.405 | |||||
| Social support | 0.804 | 0.763 | 0.848 | <0.001 | 0.911 | 0.820 | 1.013 | 0.085 | |
| Family functioning | 1.192 | 1.144 | 1.243 | <0.001 | 1.122 | 1.034 | 1.218 | 0.006 | |
| Reported adverse impact on family | 0.905 | 0.884 | 0.928 | <0.001 | 0.938 | 0.894 | .983 | 0.007 | |
| Positive parenting | 0.926 | 0.87 | 0.986 | 0.017 | 0.951 | 0.837 | 1.081 | 0.442 | |
| Hostile parenting | 1.139 | 1.091 | 1.19 | <0.001 | 1.088 | 0.987 | 1.200 | 0.091 | |
| Consistent parenting | 0.832 | 0.786 | 0.881 | <0.001 | 0.946 | 0.856 | 1.045 | 0.272 | |
| Punitive parenting | 0.832 | 0.755 | 0.918 | <0.001 | 0.999 | 0.816 | 1.224 | 0.994 | |
| Hyperactivity | 1.15 | 1.089 | 1.214 | <0.001 | 1.081 | 0.948 | 1.232 | 0.245 | |
| Pro-social | 0.94 | 0.9 | 0.982 | 0.006 | 1.024 | 0.954 | 1.099 | 0.514 | |
| Anxiety | 1.184 | 1.105 | 1.268 | <0.001 | 1.028 | 0.902 | 1.171 | 0.678 | |
| Conduct disorder | 1.103 | 1.028 | 1.183 | 0.006 | 0.848 | 0.686 | 1.049 | 0.129 | |
| Indirect aggression | 1.229 | 1.052 | 1.435 | 0.009 | 1.212 | 0.939 | 1.565 | 0.140 | |
| Property offence | 1.289 | 1.127 | 1.474 | <0.001 | 0.958 | 0.778 | 1.179 | 0.683 | |
| Ped QOL physical | 0.996 | 0.99 | 1.001 | 0.148 | |||||
| Ped QOL psychosocial | 0.971 | 0.96 | 0.982 | <0.001 | 0.993 | 0.978 | 1.009 | 0.408 | |
- Statistically significant P-values are shown in bold.
- * Goodness of fit the model (Hosmer and Lemeshow test): chi-square 6.276; d.f. 8; P-value 0.616.
- CCAC, Community Care (Home) Access Centre; CTN, Children's Treatment Network; K10, Kessler scale; QOL, quality of life.
In the multivariable model, variables: employment status, family income, family functioning and parent's reported adverse IOF were found to be significantly associated with symptoms of parental psychiatric distress. Being unemployed was associated with 242% (i.e. 3.424 − 1) greater odds of having symptoms of parental psychiatric distress in comparing to being employed (P = 0.002). The odds of having parental psychiatric distress in families with an annual income ranging from 50k to 100k is 0.388 times the odd in families with annual income more than 100k (P = 0.033). Similarly, the odd of having parental psychiatric distress in a family with 50k to 100k is 61.2% less than the odds for a family with annual income more than 100k. Each unit increase in the scores of parent's report of less adverse IOF was associated with 6.2% (i.e. 1 − 0.938) lower odds of having symptoms of parental psychiatric distress (P = 0.007). Each unit increase in the parents report of greater family dysfunction was associated with a 12.2% (i.e. 1.122 − 1) greater odds of having symptoms of parental psychiatric distress (P = 0.006). The Hosmer and Lemeshow goodness of fit test showed a good fit of the multivariable model (P = 0.616).
In testing possible interaction between variables, there was no significant interaction found among these four significant variables and the result is displayed in Table 5.
| Variables | OR | 95% CI | P-value | |
|---|---|---|---|---|
| Employment status | ||||
| Employed* | – | – | – | – |
| Unemployed | 2.451 | 0.303 | 19.811 | 0.400 |
| Family income | ||||
| Above 100k* | – | – | – | – |
| Less than 50k | 0.680 | 0.060 | 7.691 | 0.755 |
| 50k to 100k | 0.097 | 0.007 | 1.387 | 0.086 |
| Family functioning | 1.190 | 1.083 | 1.306 | <0.001 |
| Reported adverse impact on family | 0.878 | 0.821 | 0.939 | <0.001 |
| Unemployed x | ||||
| Family income less than 50k | 0.641 | 0.132 | 3.104 | 0.580 |
| Unemployed x | ||||
| Family income from 50k to 100k | 0.396 | 0.076 | 2.054 | 0.270 |
| Family functioning x | ||||
| Unemployed | 0.943 | 0.853 | 1.043 | 0.256 |
| Family functioning x | ||||
| Family income less than 50k | 0.946 | 0.839 | 1.067 | 0.368 |
| Family functioning x | ||||
| Family income from 50k to 100k | 1.068 | 0.933 | 1.222 | 0.343 |
| Reported adverse impact x | ||||
| Unemployed | 1.038 | 0.980 | 1.100 | 0.202 |
| Reported adverse impact x | ||||
| Family income less than 50k | 1.056 | 0.976 | 1.143 | 0.177 |
| Reported adverse impact x | ||||
| Family income from 50k to 100k | 1.066 | 0.984 | 1.156 | 0.119 |
- Goodness of fit the model (Hosmer and Lemeshow test): chi-square 7.48; d.f. 8; P-value 0.486.
- * Reference group.
Table 6 shows for the 2006 (CND) per person per 6-month costs for use of human services with and without a clinically important number of symptoms of psychiatric distress by the PMK by K10 scores. Expenditures for primary care provider services were higher for PMK exhibiting a greater number of symptoms of psychiatric distress (K10 ≥ 20). Specifically, expenditures for visits to family physicians and walk in clinics were higher for PMK with symptoms vs. PMK without (P = 0.002). Total physician specialist costs were not significantly different; however, costs for psychiatrist visits were higher for PMK with symptoms of psychiatric distress vs. those without (P = 0.023). Other health and social service provider costs were similar between groups; however, costs for visits to psychologists (P = 0.003) and emergency food banks (P = 0.038) were higher in the PMK group with symptoms of psychiatric distress. Medications, treatment and supply costs were higher in PMK without these symptoms, but use of medication alone was higher in PMK with the symptoms (P = 0.004). Total direct costs and indirect costs (out of pocket costs, cash transfer costs) were highest in PMK with symptoms of psychiatric distress.
| K10 ≥ 20 (n = 185) | K10 < 20 (n = 260) | Kruskal–Wallis test | ||||
|---|---|---|---|---|---|---|
| Mean | SD | Mean | SD | χ2 | P | |
| Direct cost | ||||||
| Primary care provider visits | ||||||
| a. Family physician/walk in clinic (primary care) | 95.29 | 121.46 | 62.73 | 80.51 | 10.077 | 0.002 |
| b. Emergency room visits | 42.47 | 115.12 | 25.04 | 87.97 | 3.582 | 0.058 |
| c. 911 calls | 0.88 | 5.63 | 0.18 | 2.04 | 2.626 | 0.105 |
| d. Ambulance service | 5.19 | 35 | 2.77 | 25.68 | 0.708 | 0.400 |
| Primary care provider services | 143.84 | 200.25 | 90.72 | 137.78 | 11.046 | 0.001 |
| Physician specialist visits | ||||||
| e. Adolescent medicine allergist | 0.6 | 8.18 | 0.43 | 4.87 | 0.081 | 0.776 |
| f. Cardiologist | 5.58 | 34.53 | 2.8 | 23.1 | 2.166 | 0.141 |
| g. Dermatologist | 1.16 | 9.05 | 0.41 | 4.95 | 1.568 | 0.210 |
| h. Ears/nose/throat specialist | 0.61 | 6.22 | 0.88 | 6.61 | 0.487 | 0.485 |
| i. Endocrinologist | 1.45 | 19.73 | 2.32 | 14.85 | 2.790 | 0.095 |
| j. Gastroentologist | 2.63 | 16.55 | 1.4 | 11.86 | 0.743 | 0.389 |
| k. Gynecologist/obstetrician | 17.21 | 76.96 | 22.63 | 102.28 | 0.002 | 0.966 |
| l. Infectious disease/HIV specialist | 0.9 | 12.27 | 0 | 0 | 1.405 | 0.236 |
| m. Hematologist or oncologist | 0.66 | 6.3 | 2.57 | 37.86 | 0.115 | 0.735 |
| n. Nephrologist | 9.79 | 87.5 | 3.61 | 50.58 | 0.712 | 0.399 |
| o. Neurosurgeon orthopedics/neurologist | 1.31 | 8.86 | 1.4 | 14.06 | 0.685 | 0.408 |
| p. Ophthalmologist | 3.79 | 25.25 | 1.44 | 9.95 | 0.386 | 0.535 |
| q. Paediatrician | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| r. Psychiatrist | 17.11 | 118.49 | 10.96 | 110.79 | 5.133 | 0.023 |
| s. Respirologist | 2.3 | 17.19 | 1.17 | 13.56 | 1.554 | 0.212 |
| t. Rheumatologist | 2.96 | 23.94 | 0.47 | 7.54 | 1.865 | 0.172 |
| u. Rehabilitation doctor | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| v. Surgeon (general, dental) | 1.19 | 10.74 | 2.55 | 19.05 | 0.569 | 0.451 |
| w. Surgeon (orthopedic) | 2.78 | 17.58 | 0.99 | 7.09 | 0.331 | 0.565 |
| x. Surgeon (neurological) | 0.33 | 4.47 | 0 | 0 | 1.405 | 0.236 |
| y. Other health professional visit cost | 3.6 | 17.34 | 11.58 | 80.66 | 0.096 | 0.757 |
| Physician specialist cost | 75.96 | 190.86 | 67.61 | 202.43 | 0.959 | 0.327 |
| Other health and/or social services providers | ||||||
| a. Physiotherapist | 56.46 | 368.71 | 64.47 | 417.74 | 0.512 | 0.474 |
| b. Massage therapist | 56.19 | 162.18 | 78.62 | 509.39 | 0.240 | 0.624 |
| c. Occupational therapist | 30 | 385.56 | 0.81 | 12.99 | 0.791 | 0.374 |
| d. Speech language pathologist | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| e. Chiropractor | 40.38 | 181.69 | 27.32 | 118.98 | 1.472 | 0.225 |
| f. Psychologist | 85 | 559.16 | 7.08 | 64.9 | 8.594 | 0.003 |
| g. Podiatrist/chiropodist | 5.51 | 28.87 | 10.13 | 73.05 | 0.191 | 0.662 |
| h. Nutritionist/dietician | 8.93 | 106.41 | 39.39 | 496.76 | 0.919 | 0.338 |
| i. Nurse practitioner | 1.67 | 19.92 | 0.87 | 12.85 | 0.121 | 0.728 |
| j. Visiting nurses (home care/PHN/VON/SEN) | 2.92 | 20.26 | 1.04 | 16.76 | 3.038 | 0.081 |
| k. Private nurse | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| l. Optometrist | 18.49 | 56.46 | 16.44 | 39.69 | 0.002 | 0.966 |
| m. Dentist | 131.14 | 156.3 | 124.6 | 131.2 | 0.016 | 0.899 |
| n. Social worker | 45.45 | 180.9 | 15.38 | 78.4 | 1.460 | 0.227 |
| o. Children's aid worker | 1.14 | 15.48 | 4.05 | 36 | 0.967 | 0.326 |
| p. Adolescence/school counsellor | 3.88 | 52.79 | 0 | 0 | 1.405 | 0.236 |
| q. Family counsellor | 18.11 | 92.44 | 20.25 | 157.5 | 0.486 | 0.486 |
| r. Mental health counsellor | 14.88 | 106.66 | 23.94 | 301.49 | 1.382 | 0.240 |
| s. Homemaker/personal support worker | 40.55 | 457.55 | 8.16 | 131.59 | 0.781 | 0.377 |
| t. Child/day care | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| u. Subsidised day care | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| v. Naturopath/homeopath | 10.11 | 111.15 | 6.64 | 49.95 | 0.000 | 0.995 |
| w. Complementary therapy | 22.54 | 223.61 | 3.74 | 30.99 | 0.386 | 0.535 |
| x. Employment retraining services | 1.78 | 24.27 | 0 | 0 | 1.405 | 0.236 |
| y. Meals on wheels | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| z. Emergency food/food bank | 3.76 | 24.42 | 0.95 | 15.24 | 4.325 | 0.038 |
| aa. Police | 0.32 | 4.41 | 0 | 0 | 1.405 | 0.236 |
| bb. Probationary services | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| cc. Correction facilities | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| dd. Social and recreation programmes | 20.49 | 114.3 | 16.64 | 80.29 | 0.001 | 0.977 |
| ee. Community support programmes | 0.24 | 3.31 | 0 | 0 | 1.405 | 0.236 |
| ff. Special education services | 0.52 | 7.03 | 0 | 0 | 1.405 | 0.236 |
| gg. Other special education supports | 1.62 | 22.06 | 0 | 0 | 1.405 | 0.236 |
| hh. Others social and health providers | 1.36 | 11.24 | 3.54 | 49.86 | 0.176 | 0.675 |
| Other health and social providers cost | 623.47 | 1339.4 | 474.04 | 996.55 | 1.429 | 0.232 |
| Community support services | ||||||
| a. Groups/peer support | 6.97 | 67.58 | 11.15 | 81.26 | 0.783 | 0.376 |
| b. Community health education/prevention talks | 0 | 0 | 0.62 | 7.69 | 2.144 | 0.143 |
| c. Transportation services | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| d. Housing services | 0 | 0 | 0.19 | 3.1 | 0.712 | 0.399 |
| e. Financial support/counselling | 1.89 | 19.06 | 0.19 | 3.1 | 1.859 | 0.173 |
| Other community support services | 14.77 | 68.98 | 20.84 | 103.2 | 0.411 | 0.521 |
| Community support services | 23.63 | 96.96 | 32.99 | 133.12 | 0.042 | 0.838 |
| Outpatient lab tests | ||||||
| a. Blood | 28.26 | 63.4 | 21.6 | 48.36 | 1.137 | 0.286 |
| b. Specimens | 11.33 | 47.82 | 6.21 | 19.05 | 1.914 | 0.166 |
| c. Scopes | 1.68 | 16.09 | 0.6 | 9.62 | 0.781 | 0.377 |
| d. X-rays | 7.74 | 21.55 | 7.53 | 33.89 | 1.956 | 0.162 |
| e. Scans | 25.14 | 69.52 | 23.85 | 72.17 | 0.959 | 0.327 |
| f. Breathing tests | 0 | 0 | 0.31 | 3.1 | 2.144 | 0.143 |
| g. ECG | 1.82 | 7.65 | 1.22 | 6.39 | 0.769 | 0.380 |
| h. EEG | 0.31 | 4.2 | 0 | 0 | 1.405 | 0.236 |
| i. EMG | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| l. Other outpatient tests | 24.17 | 63.59 | 21.26 | 69.44 | 0.973 | 0.324 |
| Outpatient laboratory tests | 100.43 | 165 | 82.58 | 157.29 | 2.606 | 0.106 |
| Medications, treatments and supplies/aids | ||||||
| Medication | 223.63 | 842.22 | 103.74 | 257.21 | 8.518 | 0.004 |
| Treatment | 93.73 | 1226.6 | 220.12 | 2504.6 | 0.124 | 0.725 |
| Supply and device | 3.46 | 34.39 | 13.91 | 149.14 | 0.350 | 0.554 |
| Medication, treatments, supplies, device, aids | 320.82 | 2013.7 | 337.78 | 2518.8 | 6.241 | 0.012 |
| Direct costs excluding hospital stay, day surgery | ||||||
| Direct costs excluding hospital | 1198 | 1788.1 | 1085.7 | 2768.1 | 6.153 | 0.013 |
| Hospital, day surgery facility | ||||||
| Hospital cost | 493.23 | 5190 | 136.48 | 670.7 | 0.096 | 0.757 |
| Day surgery facility stay cost | 14.05 | 51.26 | 11.54 | 49.92 | 0.494 | 0.482 |
| Direct costs including hospital stay, day surgery | ||||||
| Direct costs including hospital | 1705.3 | 5635.2 | 1233.7 | 2959.7 | 5.960 | 0.015 |
| Out of pocket cost | ||||||
| Total cost of household help | 63.25 | 400.13 | 79.27 | 332.78 | 0.446 | 0.504 |
| Total cost of babysitting received | 148.75 | 823.62 | 61.92 | 316.24 | 0.643 | 0.423 |
| Total cost to travel to receive healthcare/social services | 413.08 | 842.26 | 309.47 | 543.93 | 3.503 | 0.061 |
| Total cost for parking while receiving services | 41.08 | 97.65 | 39.71 | 90.45 | 0.041 | 0.840 |
| Wages lost by you due to you and/or your child because of illness | 397.65 | 2053.6 | 178.97 | 768.09 | 0.179 | 0.672 |
| Wages lost by others due to you and/or child because of illness | 131.96 | 441.86 | 109.22 | 522.43 | 1.872 | 0.171 |
| Wages lost by you due to you and/or your child treatment | 9.75 | 70.82 | 15.8 | 162.09 | 0.117 | 0.732 |
| Wages lost by others due to you and/or child because of treatment | 7.17 | 71.15 | 13.48 | 78.38 | 3.037 | 0.081 |
| Out of pocket | 1209.8 | 2516.8 | 807.85 | 1357.5 | 5.176 | 0.023 |
| Cash transfer cost | ||||||
| a) Worker's compensation | 161.71 | 1671.3 | 46.15 | 744.21 | 0.781 | 0.377 |
| b) Old age security | 0 | 0 | 11.7 | 165.21 | 1.426 | 0.232 |
| c) Disability pension, private | 9.73 | 132.34 | 0.28 | 4.47 | 0.060 | 0.806 |
| d) Ontario disability support programme (ACSD) | 1035.1 | 2420.9 | 570.29 | 1849.4 | 9.176 | 0.002 |
| e) Canada pension | 22.7 | 308.79 | 28.7 | 412.59 | 0.084 | 0.772 |
| f) Canada pension, disability | 87.57 | 695.25 | 9.21 | 143.69 | 0.726 | 0.394 |
| g) Child tax benefit | 1536.7 | 1643.9 | 1315.4 | 1536.3 | 3.328 | 0.068 |
| h) Guaranteed Annual Income Supplement | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| i) Veteran's pension | 0 | 0 | 0 | 0 | 0.000 | 1.000 |
| j) Survivor's benefits (CPP) | 28.54 | 388.19 | 0 | 0 | 1.405 | 0.236 |
| k) Employment insurance | 4 | 54.41 | 27.69 | 446.53 | 0.057 | 0.811 |
| l) Welfare (social assistance, Ontario works) | 114.26 | 595.6 | 90.76 | 703.43 | 1.369 | 0.242 |
| m) Other government cheque | 839.06 | 1379.1 | 721.03 | 1469.7 | 2.942 | 0.086 |
| Private insurance | 0 | 0 | 23.86 | 278.46 | 1.426 | 0.232 |
| Cash transfer | 3839.3 | 4070.9 | 2845.1 | 3191.6 | 11.444 | 0.001 |
- ACSD, assistance for children with severe disabilities; CPP, Canadian Pension Plan; ECG, electrocardiogram; EEG, electroencephalogram; EMG, electromyogram; K10, Kessler scale; PHN, public health nurses; PMK, parents/guardians most knowledgeable; SEN, Saint Elizabeth nurses; VON, Victorian Order of Nurses.
Table 7 shows per 6 months costs for child use of human service by dichotomised PMK K10 scores. Six-month expenditures for total child visits to primary care were higher in children whose parent scored distressed vs. children whose parents did not (P = 0.029). Costs for child visits to massage therapists, chiropractors and naturopaths were higher in the group whose parents score ≥20 on the K10. Social and recreation programme use was lower in children with distressed parents (P = 0.017). Indirect costs in community support services, outpatient lab tests, medication and supply use were statistically similar between groups. Total direct costs were also similar between groups of children with and without parents endorsing a clinically important number of symptoms of psychiatric distress.
| K10 ≥ 20 (n = 185) | K10 < 20 (n = 260) | Kruskal–Wallis test | ||||
|---|---|---|---|---|---|---|
| Mean | SD | Mean | SD | χ2 | P | |
| Direct cost | ||||||
| Primary care provider visits | ||||||
| a. Family physician/walk in clinic (primary care) | 86.25 | 132.43 | 60.01 | 79.82 | 3.58 | 0.058 |
| b. Emergency room visits | 84.95 | 182.44 | 53.53 | 130.28 | 2.478 | 0.115 |
| c. 911 calls | 0.38 | 2.95 | 0.63 | 3.78 | 0.563 | 0.453 |
| d. Ambulance service | 5.19 | 35 | 7.38 | 41.53 | 0.344 | 0.558 |
| Primary care provider services | 176.76 | 246.92 | 121.56 | 185.87 | 4.777 | 0.029 |
| Physician specialist visits | ||||||
| e. Adolescent medicine allergist | 1.2 | 12.91 | 1.07 | 9.08 | 0.165 | 0.685 |
| f. Cardiologist | 5.58 | 34.53 | 2.34 | 12.87 | 1.016 | 0.313 |
| g. Dermatologist | 0.19 | 2.63 | 0.27 | 3.13 | 0.084 | 0.772 |
| h. Ears/nose/throat specialist | 7.99 | 23.18 | 9.63 | 22.75 | 2.025 | 0.155 |
| i. Endocrinologist | 4.71 | 24.27 | 2.06 | 14.29 | 1.469 | 0.226 |
| j. Gastroenterologist | 1.97 | 12.51 | 1.87 | 14.99 | 0.696 | 0.404 |
| k. Gynecologist/obstetrician | 0 | 0 | 0 | 0 | 0 | 1 |
| l. Infectious disease/HIV specialist | 0 | 0 | 0.21 | 3.45 | 0.712 | 0.399 |
| m. Hematologist or oncologist | 5.25 | 35.44 | 1.64 | 12.41 | 0.802 | 0.371 |
| n. Nephrologist | 2.54 | 17.65 | 1.55 | 13.09 | 0.727 | 0.394 |
| o. Neurosurgeon orthopedics/neurologist | 29.56 | 81.4 | 17.29 | 47.9 | 2.752 | 0.097 |
| p. Ophthalmologist | 9.59 | 27.58 | 12.93 | 33.6 | 1.716 | 0.19 |
| q. Paediatrician | 65.64 | 100.1 | 94.73 | 351.07 | 0.047 | 0.828 |
| r. Psychiatrist | 10.27 | 57 | 9.25 | 96.4 | 0.645 | 0.422 |
| s. Respirologist | 3.94 | 22.5 | 4.44 | 37.68 | 0.41 | 0.522 |
| t. Rheumatologist | 6.9 | 89.43 | 1.17 | 15.52 | 0.119 | 0.73 |
| u. Rehabilitation doctor | 0.34 | 4.58 | 0 | 0 | 1.405 | 0.236 |
| v. Surgeon (general, dental) | 2.15 | 11.55 | 1.02 | 9.46 | 2.251 | 0.134 |
| w. Surgeon (orthopedic) | 4.73 | 23.84 | 8.12 | 42.27 | 0.791 | 0.374 |
| x. Surgeon (neurological) | 2.3 | 17.19 | 0.23 | 3.77 | 3.082 | 0.079 |
| y. Other health professional visit cost | 41.95 | 121.15 | 62.64 | 179.06 | 0.63 | 0.427 |
| Physician specialist cost | 206.82 | 260.95 | 232.48 | 483.59 | 1.061 | 0.303 |
| Other health and/or social services providers | ||||||
| a. Physiotherapist | 308.29 | 747.12 | 397.14 | 976.14 | 1.727 | 0.189 |
| b. Massage therapist | 39.08 | 269.25 | 2.06 | 20.69 | 5.405 | 0.02 |
| c. Occupational therapist | 433.59 | 710.33 | 478.13 | 1263.63 | 0.473 | 0.492 |
| d. Speech language pathologist | 497.95 | 1070.62 | 430.49 | 843.07 | 0.056 | 0.812 |
| e. Chiropractor | 27.27 | 152.36 | 7.45 | 56.53 | 5.692 | 0.017 |
| f. Psychologist | 50.05 | 290.4 | 27.24 | 112.86 | 0.124 | 0.724 |
| g. Podiatrist/chiropodist | 5.05 | 35.64 | 6.21 | 58.72 | 0.746 | 0.388 |
| h. Nutritionist/dietician | 43.46 | 185.53 | 26.26 | 104.5 | 0.372 | 0.542 |
| i. Nurse practitioner | 4.12 | 42.72 | 7.53 | 108.99 | 0.163 | 0.686 |
| j. Visiting nurses (home care/PHN/VON/SEN) | 379.8 | 3561.06 | 332.6 | 2848.89 | 0.264 | 0.608 |
| k. Private nurse | 29.19 | 397.02 | 252 | 4063.38 | 0.057 | 0.811 |
| l. Optometrist | 34.92 | 171.98 | 18.27 | 41.9 | 1.502 | 0.22 |
| m. Dentist | 137.1 | 146.91 | 115.58 | 143.64 | 2.928 | 0.087 |
| n. Social worker | 34.28 | 152.96 | 23.86 | 214.52 | 0.566 | 0.452 |
| o. Children's aid worker | 1.14 | 15.48 | 18.63 | 214.32 | 1.564 | 0.211 |
| p. Adolescence/school counsellor | 5.82 | 58.9 | 0.46 | 7.42 | 0.791 | 0.374 |
| q. Family counsellor | 4.58 | 35.67 | 9.79 | 115.92 | 0.676 | 0.411 |
| r. Mental health counsellor | 16.17 | 211.31 | 13.81 | 195.14 | 0.115 | 0.735 |
| s. Homemaker/personal support worker | 597.36 | 3379.6 | 715.64 | 7140.08 | 2.902 | 0.088 |
| t. Child/day care | 488.57 | 1646.34 | 640 | 3392.24 | 0.809 | 0.369 |
| u. Subsidised day care | 27.58 | 317.07 | 63.79 | 460.52 | 0.455 | 0.5 |
| v. Naturopath/homeopath | 11.31 | 48.56 | 3.73 | 35.65 | 8.704 | 0.003 |
| w. Complementary therapy | 14.41 | 191.19 | 10.88 | 134.29 | 0.167 | 0.683 |
| x. Employment retraining services | 0 | 0 | 0 | 0 | 0 | 1 |
| y. Meals on wheels | 0 | 0 | 0 | 0 | 0 | 1 |
| z. Emergency food/food bank | 0 | 0 | 0 | 0 | 0 | 1 |
| aa. Police | 0.97 | 13.23 | 0.23 | 3.72 | 0.06 | 0.806 |
| bb. Probationary services | 0 | 0 | 0 | 0 | 0 | 1 |
| cc. Correction facilities | 0 | 0 | 0 | 0 | 0 | 1 |
| dd. Social and recreation programmes | 12300.4 | 40640.1 | 12541.5 | 30921.9 | 5.67 | 0.017 |
| ee. Community support programmes | 8.35 | 105.09 | 14.08 | 127.6 | 0.167 | 0.683 |
| ff. Special education services | 1032.91 | 1414.06 | 1063.57 | 1375.78 | 0.001 | 0.981 |
| gg. Other special education supports | 166.89 | 482.56 | 118.06 | 599.73 | 3.266 | 0.071 |
| hh. Others social and health providers – respondent | 909.05 | 3443.68 | 960.9 | 4437.34 | 0.64 | 0.424 |
| Other Health and social providers cost | 17609.7 | 41392.2 | 18299.9 | 34793.1 | 0.483 | 0.487 |
| Community support services | ||||||
| a. Groups/peer support | 0.16 | 1.64 | 0.13 | 1.89 | 0.118 | 0.732 |
| b. Community health education/prevention talks | 0 | 0 | 0 | 0 | 0 | 1 |
| c. Transportation services | 11.43 | 44.14 | 11.47 | 46.14 | 0.035 | 0.853 |
| d. Housing services | 0 | 0 | 0 | 0 | 0 | 1 |
| e. Financial support/counselling | 0 | 0 | 0 | 0 | 0 | 1 |
| Other community support services | 39.02 | 158.63 | 33.08 | 143.93 | 1.055 | 0.304 |
| Community support services | 50.61 | 162.07 | 44.69 | 148.68 | 0.898 | 0.343 |
| Outpatient lab tests | ||||||
| a. Blood | 25.64 | 78.33 | 14.77 | 40.23 | 2.772 | 0.096 |
| b. Specimens | 6.04 | 32.16 | 2.57 | 9.64 | 1.234 | 0.267 |
| c. Scopes | 0 | 0 | 0.6 | 9.62 | 0.712 | 0.399 |
| d. X-rays | 8.14 | 28.23 | 6.52 | 19.75 | 0.412 | 0.521 |
| e. Scans | 6.41 | 30.13 | 8.77 | 40.31 | 0.255 | 0.613 |
| f. Breathing tests | 0.88 | 6.69 | 0.87 | 4.5 | 0.959 | 0.327 |
| g. ECG | 1.07 | 5.36 | 0.53 | 3.65 | 1.451 | 0.228 |
| h. EEG | 3.09 | 12.95 | 1.76 | 12.17 | 2.906 | 0.088 |
| i. EMG | 0.83 | 11.24 | 0.59 | 9.48 | 0.059 | 0.809 |
| l. Other outpatient tests | 13.69 | 45 | 16.22 | 63.36 | 0.509 | 0.476 |
| Outpatient laboratory tests | 65.8 | 158.79 | 53.19 | 109.75 | 1.685 | 0.194 |
| Medications, treatments and supplies/aids | ||||||
| Medication | 486.78 | 1855.13 | 337.2 | 993.92 | 1.778 | 0.182 |
| Treatment | 166.44 | 2015.71 | 55.72 | 456.9 | 2.198 | 0.138 |
| Supply and device | 1178.52 | 8150.24 | 470.25 | 1775.81 | 0.189 | 0.664 |
| Medication, treatments, supplies, device, aids | 1831.73 | 8749.61 | 863.17 | 2262.15 | 0.395 | 0.53 |
| Direct costs excluding hospital stay, day surgery and respite care | ||||||
| Direct costs excluding hospital | 19941.4 | 42411.7 | 19615 | 34979.1 | 0.219 | 0.64 |
| Hospital, day surgery facility | ||||||
| Hospital cost | 653.08 | 3058.03 | 152.73 | 754.42 | 3.415 | 0.065 |
| Day surgery facility stay cost | 11.89 | 47.42 | 15.38 | 56.21 | 0.329 | 0.566 |
| Respite stay | 539.23 | 1764.87 | 352.03 | 1459.36 | 1.803 | 0.179 |
| Direct costs including hospital stay, day surgery | ||||||
| Direct costs including hospital | 21145.6 | 42432.9 | 20135.1 | 35008.7 | 0.001 | 0.974 |
- ECG, electrocardiogram; EEG, electroencephalogram; EMG, electromyogram; K10, Kessler scale; PHN, public health nurses; SEN, Saint Elizabeth nurses; VON, Victorian Order of Nurses.
Discussion
In this more employed, middle-aged group of Canadian, English-speaking, married parents (PMK) of children with diverse diagnoses, 42% exhibited a clinically important number of symptoms of psychiatric distress. This distress was not related to the severity of the child's physical dysfunction as implied by research that compares parents of disabled vs. non-disabled children. However, the child's psychosocial, anxious and behavioural dysfunction was related to symptoms of parent psychiatric distress. This distress was related to low income but not low education or unemployment.
The amount of psychiatric distress represents a clinically significant amount of symptoms; however, these higher than published rates of distress in meta-analysis are possibly due to three reasons; anxiety was included in the screening tool used, parents of a heterogeneous group of multiple diagnosis children (usually excluded from studies of children with a single diagnosis) were included and parental/family needs were eligibility criteria along with the child's complex needs for receipt of CTN services. Clearly, this level of parental depression and anxiety is a significant societal concern. Rates of a clinically important number of symptoms of psychiatric distress were similar across child age groups. Prior research has suggested that anxiety/depression in mothers with children with special needs decreases over time (Glidden & Schoolcraft 2003; Singer 2006). Future longitudinal research focused specifically on changes in parental psychiatric distress is needed to make more accurate conclusions with respect to the age of the child with complex needs and parent symptoms of psychiatric distress.
Similar associations were found in this population between parental psychiatric distress and family and child variables. As supported in the literature, parent symptoms were associated with lower social support, greater impact on the family, higher family dysfunction, poorer child behaviour, poorer parenting styles and poorer child psychosocial heath. In another paper in this series, we explore these variables further and investigate the interactions and relationships between these variables, their impact on child psychosocial quality of life (Thurston et al. 2009).
This was the first study to publish costs for the use of human services by of a heterogeneous group of children with a variety of complex needs. Trends for higher total direct and indirect healthcare costs for parents with symptoms of psychiatric distress are similar to other findings published by members of this research team (Browne et al. 1994). Specifically, mothers of ‘normal’ newborn infants with post-partum depression (12–15%) had statistically higher total utilisation costs than mothers without (P = 0.02) (Roberts et al. 2001). Chronically ill adults with depression attending specialty outpatient clinics had twice the annual expenditure than those not depressed (Drummond-Young et al. 1996) and single mothers on social assistance with depression had significantly higher hospital expenditures and income maintenance costs (Browne et al. 2001). As found in our other work (Byrne et al. 2006), effective treatment of depression in parents of children can lead to improved behaviour and decreases in overall costs of or child use of health and social care service and possibly family income.
Some clinically important and interesting trends were found in the healthcare utilisation of these parents with symptoms of psychiatric distress. Despite the increased use of mental health professionals, the majority of parents with symptoms of psychiatric distress were not taking psychiatric medications. Combination therapy is cited as the best approach (Browne et al. 2002). The reasons for this are not clear: under recognition, patient and provider attributions that distress is to be expected when living with high needs children, under prescribing, lack of compliance and/or ineffective prescribing may all be factors. Overall, medication costs were higher often because the somatic issues that co-occur with psychiatric distress are presented and treated and not the distress itself. Combined out of pocket costs including babysitting and lost wages were higher. Total cash transfer costs including disability were higher. While not statistically significant, the higher expenditure for use of physician specialists and use of the disability support programme may be a marker for comorbid poorer physical health in these PMK. Finally, the $1000 total per PMK greater expenditure for use of all human services during the previous 6-month period equals a difference of $2000 per parent per annum per year. This means that for every 50 parents whose psychiatric distress could be resolved, there is the potential savings of $100 000 that could be invested in mental health care. The costs to society by not treating parents of children with complex needs who have symptoms of psychiatric distress are potentially greater than the costs of treatments.
The children's increased use of primary care services in distressed parents is consistent with the literature. As suggested by Mitchell & Hauser-Cram (2008), parents may be overestimating the severity of their children's health needs as a result of poor personal well-being. Parents who feel unable to cope with high demands turn to others for help, notably their children's doctors or some other insured service that may not be the service needed. Primary care providers should evaluate the distress of the parent. The children of parents in distress also have higher expenditures for use of less traditional children service providers (massage therapists, chiropractors, naturopaths) perhaps also an indication of PMK physical limitations, inability to cope and turning to others for help. Children with complex needs and distressed parents lower costs for use of social/recreational programmes may also be due either to the parents feeling overwhelmed and unable to reach out and use mainstream community programmes or with lower incomes unable to access these services because of fees, or both. Interventions effective at treating psychiatric distress in parents with special needs children could avert health child social care utilisation costs for both the parent and the child in the same year in systems of national health insurance.
‘Family-centred’ child rehabilitation services currently focus primarily on physical rehabilitation services for the child. Integrated services for parents to both recognise and adequately treat their distress are not well established in the current system of rehabilitation services for children with complex needs. Clinicians unprepared to deal with parent needs report less ability to help with the child's rehabilitation (CTN clinicians, personal communication, November 2008). Overwhelmed parents are expected to advocate for their child needs in one branch of care and then deal with their own needs in a separate branch of primary care. This is clearly a difficult task when parent and family resources are already taxed. Child rehabilitation programmes need to recognise the importance of the parent's mental health and provide screening and effective treatments. Family therapy, support groups for families, respite, medications, etc. are all programmes that need to be integrated in the child rehabilitation system and could pay for themselves the same year by averting the use of more costly insured health services. The ultimate goal of child rehabilitation programmes is for the parents and family to maximise their well-being and ultimately family functioning despite the child's challenges and limitations.
Results and findings are difficult to generalise outside this study population as contexts may differ. Compared with published data from the Canadian NLSCY, this sample of PMK was similar with respect to age, sex and income levels but differed as follows. Our sample included more two-parent families, more PMK who had completed post-secondary education and the PMK in this sample had lower employment rates compared with the NLSCY sample of PMK (Brehaut et al. 2004; Statistics Canada Report October 2002). One could say that married, educated parents, staying at home with their children had more time to participate in this research. The study may be missing important information from working, lower educated, single parents – likely those with greater need. Parents who are overwhelmed with caregiving, specifically with very young complex needs children, may not have the extra time required to participate in research. Similarly, those parents who feel they have adequate resources and control may not see the benefit of participating.
